So what does all of this mean? Molar pregnancy 101

I realized that I really never explained what on Earth this type of pregnancy is. I don’t even know if anyone *wants* to know, but I figured I’d explain it and provide a few links, just to clarify. (We have spent hours scouring the web for information about it, and it is, frankly, really hard to come by. There is no way around this: this is a fairly rare pregnancy outcome.)

So this pregnancy was a partial molar pregnancy, or a partial hydatidiform molar pregnancy. There are two types of molar pregnancies: complete moles, and partial moles. In the complete mole, there is no genetic information in the egg, and the sperm fertilizes it and makes a copy of its own genetic material, so there are 46 chromosomes, but they are all from Mr. Swimmer. That type of pregnancy develops into a massive placenta that looks like a snowstorm on an ultrasound, and there is no baby or fetus present.

In a partial molar pregnancy, the egg has genetic material, but for some reason, the egg never signals to the other sperm that it has been fertilized, so two sperm (eagerly?) fertilize the egg. (This is thought to be an egg dysfunction. I thought I’d spell it out for you. Yes, that would be *MY* egg dysfunction. You cannot find that anywhere in the medical literature. I had to ask my doctor, who has devoted his life to this issue, to clarify that for me.) The fetus then has 69 chromosomes (triploidy), rather than the normal 46 (or liveable, but not typical, 47). Having 69 chromosomes is absolutely fatal. There are cases where a baby has survived with 69 chromosomes, but s/he typically does not live very long.

In a lot of the literature online, it says that there is no heartbeat present for a PMP. I don’t know how accurate that is. We saw a healthy, strong heartbeat twice on ultrasound and made it to the second trimester with what we thought was a healthy, normal-looking baby. By the time we had found out there was no heartbeat, I do not know if the baby looked abnormal (it looked like a dead baby to me, but then again, I am not really looking at lots of ultrasound pictures of alive or dead babies these days). I know that the placenta, by THAT time, looked abnormally large. That was what our doctor told us was suggestive of a molar pregnancy – that the placenta looked strange (I don’t know if she was just sparing us the misery of knowing our baby was odd, too, is what I’m saying. Does that make sense?).

So the symptoms of a molar pregnancy include abnormally high hCG (pregnancy hormone) levels, which come with more intense nausea/vomiting, early expansion of the uterus (so one looks further along than one actually is), ovarian cysts (there are typical pregnancy ovarian cysts that support a healthy pregnancy, and there are cysts that are not normal from high serum hCG), and some other symptoms that I didn’t experience whatsoever, like bleeding. If you read through some of my earlier posts about “popping”, and the daily puking update, you will see that early on, I had some of these symptoms – but I had no idea that they meant my baby wasn’t right. Plus, I have lots of friends who are also very nauseated in pregnancy – I thought that it was normal to throw up multiple times a day. (And their babies are alive and healthy now!)

The cancer issue: what on Earth am I talking about? Well, a molar pregnancy is a form of gestational trophoblastic disease (GTD). Because the placenta is this strange mix of chromosomes, it really buries itself into the uterus. Molar pregnancies are almost always evacuated by a D&C (dilation and curettage). Most of the time that tissue is evacuated entirely, but sometimes it isn’t, and the placenta material left behind can act like a tumor. It continues to produce hCG, and if it is left unchecked, it can metastasize to the lungs (most common), GI system, or brain. So although all women who have a D&C generally have a quantitative hCG test to ensure that there is no residual tissue left behind (I hate the term “products of conception”, but in this case, that’s really what it is), for molar pregnancies, women must have weekly hCG tests to ensure that their hormone levels are going down. If the hCG levels go up or plateau (less than a 10% change from week to week), they either have a second D&C or start chemotherapy to prevent the tissue from metastasizing.

The goal is to have zero hCG, which is defined by a score of <5 or <2, depending on the lab. (For me, it is less than 5.) Once I have three weeks where I have zero consecutively, I switch to monthly blood draws, and then after three months of zero hCG on THAT, we can consider trying to conceive. That decision is on hold and I probably won’t blog about that here.

There are a lot of things that say that a couple cannot TTC until the woman is clear for 6 months, or 12 months. Those are dated statistics, and better research indicates that three months is a safe amount of time for a woman to wait to conceive.

The reason one NEEDS to wait is because in pregnancy, the hCG levels in a woman’s blood begin to double from the moment of (implantation?) – so all of a sudden, hCG levels rise. At that point, it is impossible to tell if she is fighting cancer or growing a baby, and the woman’s health is at risk. Although this is a very treatable (approaching 100%) cancer, it is not so treatable if one is also trying to support a baby.

So essentially, this sucks. 🙂 Can I say that? This is kind of like a double whammy – we made it through the first trimester, then lost the baby, then lost a lot of blood, then lost a lot of time, and now we’re waiting to be sure that I don’t have uterine cancer. Talk about getting more than we bargained for. Last week, I was quite certain that I would have to have chemo, because my hormone levels were so very high. This week, in the greatest news of the last month, they look to be about where we could expect a normal post-D&C PMP to be. THAT is a huge blessing for so many reasons – not only the cancer, but also because having high hCG levels means that one also has lots of pregnancy symptoms. It is such a painful reminder of what once was, to have heartburn, to be throwing up, to be craving something, totally constipated, or waking up totally congested. You know, the joys of the first trimester…sans baby. It’s been a month since the D&C, and I can honestly tell you that I have only had about 5 days without a lot of those symptoms. That is really emotionally painful.

So if you are wondering how to pray, well, we are just praying that God opens a door somewhere, and we are praying to feel at peace with all of this. I usually don’t pray for THINGS, but these days, I am also praying that the levels go down, and go down quickly. So far, so good 🙂 but I want to also say that if the levels had gone UP, I wouldn’t be questioning whether God was listening or not.

Sometimes that is a tricky line to walk.

Here are two articles on line that are also good sources of information:

And just to clarify – this was a freak thing, although we have a higher chance of having another molar pregnancy given this one (originally it is 1/1000 pregnancies; now we have a 1% chance of having a second). However, it doesn’t make it any easier. To us, this was a baby, and it was a loss, and this additional anxiety is like rubbing salt onto a wound. Although it is true that my antibodies did not kill the baby – and for that I am really, honestly, relieved – we have enough else going on that really, that reality is diminished. Perhaps I will be more appreciative of the randomness of this…later.

I am intentionally unpasswording this. I will be changing the PW for this blog after this. If you’ve never commented before, and still want the PW, now is the time to make yourself known. (If you are a regular commenter, don’t worry about it – I will email you directly. You don’t need to come up with something here to get the PW! :))

For those who might come here because they also have a molar pregnancy, feel free to email me.

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23 comments

Thanks for posting all of this — I had been able to pick up most of what you’ve said from context, etc, in your posts over the last month, but I really appreciate you taking the time to explain it all (you have always been very good at explaining things to me :o).

I want to tell you how strong you are, but I know when people say things like that to me, I’m like, um, do I have a choice? It’s either cope with this or kill myself. I know you don’t really have a choice in what is happening, but you do have a choice in how you handle it, and I really admire you.

Thanks for such a relatively easy-to-follow explanation – I was clueless and read a little online but you make more sense. What a scary situation and I’m glad things are starting to go better – at least physically, I’m sure the rest will take a lot longer. Always hoping for you for things to get better, you know that.

I think maybe you should be a doctor afterall…that was very well explained. Sucks Rachel – it’s definitely one of those very rare things we learn about in medical school, but I’ve never actually followed a patient who had a molar pregnancy. I’m just so sorry it happened to you.

You did a really good job explaining all of that, thank you for taking the time and I’m guessing expending a lot of emotional effort to do so. I am SO glad your levels are going down – I will continue to pray for that, and that your body will fully “right” itself so that you guys can move forward into whatever God has in store for you.

God is with us in every circumstance and does allow really hard stuff to happen sometimes – and I think we receive extra blessings if we allow those hard times to draw us to Him and build our character. And that’s what I see happening in your life. So I give praise to Him for what he is doing in you, and I give praise to you for recognizing it.

Thanks you for writing this down. Just had D&C for partial molar pregnancy two and a half weeks ago. It was helpful to hear someone elses summary of the information that is out there. I am curious to hear what happened as you are a year ahead of me in this process.

I had a molar pregnancy about 13 years ago (30 yrs old now, so I was 17).

GYN was great, he had to even go to the library and check books out (this was pre internet!) I only found out when they did a preg. test to get the depo bcp and within days I was very sick, my hcg was 500K. I thought I had my period.

Any one can feel free to ask me any questions.. Alena, how are you?

So, I am doing the relay for life, i wonder…… does this make us cancer survivors?

So I 1st want to give my condolences for your loss & for everyone else who has lost a pregnancy. I too had a complete molar pregnancy at 13wks, in 2007. A year later I had a beautiful healthy baby boy & 19mths after him I welcomed another healthy boy. I sit here 4yrs later, going through it again. I had a d&c 2wks ago & was told today it was a complete molar pregnancy. & my dr is in disbelief he had the nerve to ask how I do it? WTF like I wanted this to EVER happen? I am trying to get research to see the likely hood of GTD & cancer for someone who had 2 molars. Good luck with everything & my prayers to you & your family.

Hello, I hope it is okay I am commenting though I do not know you. Your post was very helpful. I just had a molar pregnancy in May. We were 2 months along when we found out. I had a D&C and had one test a few weeks later that showed my HCG levels were zero. The doctor wanted to have another test done after my cycle, but …well…it never happened. I took a preg test and it was positive. This was not planned. Anyway, it is only a few weeks later and my HCG levels are insane. They were 15,000 on Monday and 30,000 today. The doctor will do an ultra sound tomorrow. I am more than nervous, but who’s to say what could happen.
I want to thank you though, for reminding me to pray. Thank you for also helping me to know God will listen and He is there no matter the outcome.
Thank you for being open with a hard thing and helping me out with my own hard things.

I just found out a few hours ago that the pathology came back from my D&C at 13 weeks and I had a partiam molar pregnancy. All your info has been so helpful in answering so many of my questions. Thank you. What happens if your HCG levels don’t go down naturally? Do you have to have another D&C? How long does it usually take for levels to reach 0? I will have my 1st blood test tomorrow and I don’t know what to expect.
Thanks
Heather

Thanks for this wonderful blog post. Molar is something so unheard of and you really did a great job explaining it.

My sister-in-law recently finished treatment for a CMP. She ended up with the GTD and underwent the chemo.

Almost two weeks ago, I went into the ER with heavy, bright red bleeding. After U/S and nothing found. I was told I was miscarrying and to go home and wait with Percocets. Followed up with my doctor and my HCG was 17,000 at 5 weeks and didn’t “add up.” I was told I had a subchorionic hemorrhage, which could’ve been the cause of bleeding. Have had multiple blood draws and HCG has been climbing. Multiple U/S as well and still nothing found. Finally, this past Monday, 7 weeks, they found a heartbeat and we rejoiced! We felt more happiness than the day I found out we were expecting! That was short lived, because we followed up with our doctor the following day and she told us about an abnormality and they suspected it was a mole. My heart sank. We have another high-risk U/S tomorrow so I’m praying for any news.

I am dealing with similarities- I had an ultrasound for dating today which they said showed multiple cysts in my uterus and the “baby” was measuring smaller than the sac along with a HR of 100- they said this was concerning for partial molar- I had my HCG levels drawn today in which they said they were rising appropriately. I will have another ultrasound in a week- any thoughts?

Hi I know it’s been a while since you posted this but I am also going through a suspected PMP I have another scan tomorrow one week on to see if heartbeat but last week there was no heartbeat and ‘shadows’ on the transvaginal scan. I’m just looking for hope thank you

Thank you for this information! We are waiting for results to see if my pregnancy was a partial molar. Not a lot of websites give too much info, so this is very helpful. I am sorry for your loss. We miscarried the beginning of May and had a D&C the week after we found out. The pain seems endless, but we have a very loving God 😊

I just found out my naturally miscarriage baby at 7 weeks was a partial molar pregnancy. I am furious at my midwife and clinic that they waited for 2 weeks to tell me the result and didn’t tell me I need to follow up my HCG level or wait for 3 months. Thank you for all the info you posted.

Do you know if the dysfunctioning egg was an one-off incident or there is a higher chance that a large percentage of the eggs are not functioning ?

Thank you for sharing. My daughter is almost five months pregnant, and baby boy peanut was diagnosed with Triploidy on Monday. We have scheduled the termination for this Friday. Having to schedule the death of your own child is the most unthinkable thing in the whole world. My daughter is devestated. Torn between wanting to protect her own health and future pregnancies, and not wanting to believe the results/make this decision. We are all just heartbroken. Reading this helped me know that we are not alone in this.

I hate to hear this has happened to more than just myself. I too had this happen, and was completely devastated. I was 3months in before it was recognized or showed symptoms of something gone wrong. After a year of weekly visits to the Dr. At my last appointment to check my hcg levels an get my weekly shot of methotrexate, my levels had already doubled and increased again. I then was rushed to ultrasound. Where I was terrified of more bad news…to finally have some terrific news I was pregnant again..although still not in the clear at this point so I was monitored closely. This pregnancy ended in a very healthy baby boy and shortly after my daughter was born. December 30 2016 news of yet again another baby on the way.. don’t loose hope! I was told I’d never have more baby’s and that I should have had a hysterectomy…Thank god I didn’t do that..